My sister had a complete laryngectomy 2 1/2 years ago and now she has a tumor on the back of her tongue which is going to be removed surgically in 3 days. I would really appreciate hearing from anyone who has had similar experience. We want to know what to expect after surgery. Thanks in advance for any help.

Welcome to OCF! Im very sorry to read about what your sister is going thru.

Ive not been thru the type of surgery as what your sister will have done. Ive seen several members here go thru things similar. I would suggest trying to have someone with her as much as possible while she is in the hospital. She should have someone there to help her and watch out for her well being. Hospital staff will come into her room and expect her to speak to them. A dry erase board will help her to communicate easier.

Is your sister able to talk at all? If so and if she is getting a trach, ask her surgeon (prior to the day of surgery) for a possey muir valve so she will be able to talk with the trach. Get your sister to allow others access to her health info. Make sure she gives permission for all the medical staff to speak to everyone. The HIPPA laws are strict and some staff follow it to the letter which could mean no info at all for anyone.

Expect her to be in the hospital at least 4 days, maybe even a week. She will be probably be pretty uncomfortable the first few days. Make sure her doc prescribes at least 2 different pain meds. She will probably hurt more the second day after surgery than the day of her surgery. If she has 2 different kinds of pain meds prescribed, she can alternate between the meds so she will never have to wait for a dose. Ive found too often when I would ask for pain meds it wasnt time yet so I would have to lay there in agony waiting until I was allowed pain relief meds. Thats why having 2 on file in her chart works much better. Being in pain is not helpful at all for any patient.

They probably will take tissue from her wrist or leg to rebuild her tongue. It will be swollen for a couple weeks. It might even feel too big. Additional surgeries can be done down the road to debulk the new tongue.

She may need physical therapy and speech therapy. These are important to start as soon as possible.

Best wishes to your sister with the surgery.

Thank you so much for your reply. We will definitely keep a close eye on her after surgery. She will not be able to speak, so we got her a boogy board to write on. I'm glad you mentioned the pain meds and will ask the doctor to do that for her. She has been through so much already. We are hoping and praying this surgery will be a success and she can finally quit worrying and being afraid.

Hi, we have been through this. Some thing similar.
2 1/2 years ago Kris had a total Laryngectomy as well as a total Glossectomy. So he lost both his voice box and his entire tongue.
As you sister has already had a laryngectomy her Stoma will be well formed and her airway secure. She won't need a trachy tube as her Trache is well formed.
Kris communicated initially with a whiteboard, then moved quickly onto the IPad. He uses an app called " Speakit" it is free to download.
There is also something called a Boogieboard , you could check it out.
How will your sister be fed? Are they just going to use a Naso gastric tube for feeding,? Have they discussed a PEG tube. I would think that they will get her swallowing pretty quickly and of course as she has had a laryngectomy aspiration will not be an issue. It will just be a matter of the SLT working with her to get her swallowing. Kris, with no tongue, started swallowing after 2 weeks and swallows all his nutrition with no problems.
She will be fine. Lots of love and encouragement from her family will get her through. Always be positive.
Tammy

Tammy, I am so glad you reached out to me. When my sister Katie reads this it will give her some badly needed comfort. She has been feeding herself with a g-tube for 3 months and she also has a peg tube. She has a great doctor and a really good speech therapist. I'm glad your husband is doing well, it had to be really hard for him to lose so much all at once. This information will truly give her hope. We haven't heard from anyone with similar circumstances. We already got her a boogie board and will check out that app for the ipad. She has not been very positive at all, but this information is going to help her a lot. Thank you so much for helping us.
Molly

Hi Molly
You tell Katie that she can do this and that she will still live a great life. Just take it one day at a time initially.
Does she communicate with a TEP prosthesis at this time?
Kris has a TEP and even without a tongue he talks. So you tell Katie that she will still be able to talk. And she will be able to eat.
Of course with all the swelling that will occur post surgery, speech will initially be difficult and this is where the speech aids come in.
Kris and I are off to Asia for a month in August - life is still good . Different, but good.
Tammy

When you say the back of her tongue do you mean Base of Tongue? Whay type of surgery?

Hi David, it is the base of her tongue, malignant neoplasm at base of tongue. The doctor said he is going to have to remove half of her tongue. The tumor is about an inch in diameter.

Hi Tammy, yes she has a TEP. I just read her what you said and she is really feeling better about the surgery now. I can't tell you how great it is to actually talk to someone else who has been through this. Molly

Hi Molly, yes my Kris and your Sister Katie are indeed a rare pair. There are not many who have had to have both these surgeries
There is 1 man we know of who our ENT told us about , who had his surgery 22 years ago. This is survivable and doable.
Tell Katie we are thinking of her and will be here to help and give advice as you need.
Please keep us posted.
Tammy

Thanks Tammy, I will keep you posted. I know we will have a lot of questions after the surgery tomorrow. You guys are awesome! Molly

Tammy, just wanted to let you know Katie did well with her surgery and the doctor said everything went as planned. She is in intensive care but doing pretty good. The boogie board is really coming in handy. They plan on getting her up tomorrow and walking, which is good. One day At a time. Talk to you soon.

Very good news Molly. Getting up and out of bed will make her feel so much better and is wonderful for her recovery. I am a firm believer in getting up and moving.
I hope the swelling will go down quickly and she can try out that TEP again soon.
Tell her she is in our thoughts and prayers.
Tammy

Hi Tammy, thought I would let you know Katie is getting out of the hospital today! She is very positive. Her speech therapist has been working with her by giving her tongue exercises to do. She says it really hurts but she will keep doing them. The doctor does not want her to try to talk so she won't. Hopefully she can try in a couple of weeks. Thanks again for your help and prayers. Molly

So glad she is doing okay. Tell her persistence is the key.. Don't give up hugs.

That's really good news. A positive attitude makes a huge difference to recovery.
Hope her nutrition is going well and that she has good pain relief to cope with the exercises if she needs.
I'm sure she will do well.
Tammy